Genetic Non-discrimination Act, a Primer

The Genetic Information Nondiscrimination Act (or, GINA) is set to go into effect next week for employers, according to this NYTimes article. GINA is a godsend for us BRCA-ers, because it means employers can’t say “Well… you might get breast cancer at 40 and not be able to work with us, so buh-bye!” The article is a great primer on provisions set forth in GINA, so if you’re not sure what it entails, I’d suggest a perusal.

I’m not putting down the article, but every time I read something like this I have two reactions:

1) Frustration. I know they have to, for space, but these articles totally boil down genetic testing to one or two nondescript sentences, which capture nothing about the real reason why people get tested or why genetic testing can be a great benefit to someone’s life and health. Then, in the comments, there are inevitably people who say, “Genetic testing is dumb. Why would anyone do it?” Grrr.

2) Worry. If the world turns into Gattaca, I’m going to be like Ethan Hawke. All of us BRCA-ers are going to be like Ethan Hawke. We’ll be at a disadvantage. There is something in our genes that makes us “less-than”, in a genetic health sense. I can’t say that doesn’t scare me a little. What if someday our society DOES discriminate based on genes? That day may not be far off. And I may be considered unfit, even though I’m completely healthy otherwise and I don’t often engage in risky behaviors. Again, grrr.

Does anyone else have these reactions?

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3 responses to “Genetic Non-discrimination Act, a Primer

  1. I have worries about this too. I looked at emigrating to New Zealand and no-one wanted to comment on my gene status. I worried about getting work before my PBM too, who would employ me knowing I would soon be out of action. A nightmare situation. The stress was outrageous. Thankfully I don’t need to worry about insurances being in the UK but it never ceases to astound me the worry this brings those of you with insurance issues in USA and Canada.

    Surely, if we have a predisposition to cancer at 85% and we reduce it to below the population at 2% by preventative surgery we cannot be discriminated against?? The general population have genetic mutations but they just don’t know what they are, science has not studied everyone or every disease genetically. How can you discriminate against the few in the early days of this science practice?? I get one cold every 6 or 7 years, which makes me healthier than the average person and I work hard.

    As you can’t prove a ‘what if ‘ or ‘maybe’ statement, it should never be possible to discriminate. The minute I am, a rap on my lawyers door will start the procedings. Fight? Like a warrior!

  2. Hi. Is it OK to add your e-mail to a FORCE database so we can send you important updates that you may want to add to your blog from time to time?

    If so, please send me your email address. THANK YOU!

  3. Hi! I’m another young BRCA1 mutant and I’d like to add you to my blogroll, if you don’t mind.

    I definitely hear what you are saying on both points. Regarding the first one, though — comments threads on the internet for anything remotely controversial are always filled with people who make judgment without understanding. That’s their problem, though, and not the problem of anyone who has seriously thought through testing. I agree, though, that I wish the articles would include more discussion of the reasons why people get genetic testing.

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